2018 EB Awareness Week

For EB Awareness Week (October 25-31) 2018 I would like to touch on one of many complications of Epidermolysis Bullosa which is skin cancer: Squamous Cell Carcinoma. I believe it should be spoken about more frequently, though, I can understand the heartache that comes with any type of cancer. *Photos will be linked below.

Squamous Cell Carcinoma is a fairly common skin cancer seen in adults (without EB) due to years of sun damage and/or overuse of tanning beds. The nose, cheeks, ears, chest, upper lip, scalp, and hands are most commonly affected by this cancer. The cancer is usually treatable with little to no complications but can result in death if undiscovered and untreated. For those with Epidermolysis Bullosa, however, the cancer is not usually slow growing, especially in my experience. While skin checks are tiresome and an addition to the already load of doctor appointments, skin checks are essential to save your life. If something appears abnormal or isn’t healing, this should not be ignored thinking it’s “just EB”. Even if your doctor says they don’t believe it’s cancerous upon examination but something seems off, push for a biopsy. It has happened to me. It doesn’t mean you have a bad doctor, sometimes diagnosing ailments with EB can be challenging. SCC’s appearance can differ greatly in EB patients. SCC mixed with EB combination causes cancer to become a wildfire—it can become invasive quickly even metastasizing, unfortunately, resulting in death due to the very limited treatments (chemo usually is not an option or recommended). There are different medications that have been proven to help slow and kill cancerous cells for those with EB. I, myself, have not experienced these alternatives.

SCC has been in and out of my life for more than half my life now. You can read more in-depth my first struggles with SCC, etc: right here. I had SCC removal of my right arm back in 2016 without much complication, though, I had questionable painful (even red and some swelling) built-up keratinous areas on my feet, hands, leg, and knee. These built-up areas were abnormally tender. Even after much soaking and moisturizing, these areas grew back in a couple days. Usually, wounds become abnormal with squamous cells but later in my adulthood I discovered it’s not just opened wounds that could be cancerous—even unopened areas can be cancerous. I also had a small wound on my left arm that started to develop that wouldn’t heal, at all. It became increasingly painful over time. The pain started radiating up my arm and neck, telling me it’s definitely bothering vital nerves. The wound started out as dime sized then opened up to half dollar size. Another indication was the wound’s appearance was similar to a “perfect” circle. The edges of the wound did not have any new skin growth over time. Usually, a “healthy” wound has uneven edges displaying activity of new growth over a few days.

You’re probably wondering why I waited so long? I had been on the fence about the differences from my past tumors/skin cancer by its appearances. I also had been battling financial and legal burdens at the time. The hospital is 250 miles one way which is obviously challenging especially having to sit in a car after surgery. Unfortunately, there is limited support nearby for me especially catering to Epidermolysis Bullosa. Planning the surgery itself was tiresome because most of my past surgeries here in Utah have been done without putting me under.

I had seven areas of removal. The areas were covered in INTEGRA to serve as some protection and jumpstart healing. Six of these areas were questionable spots over the past 2-3 years. Five of the seven were positive for squamous cell. Two were invasive and the rest were in situ (means stays within location found, not invading neighboring tissues).

The very invasive one on my left arm was the most painful before removal. It still has cancerous cells meaning I will require another surgery soon. My lymph nodes under my armpit and left breast were increasingly tender and grew painful. With a dermatological disorder and constant bacterium, lymph nodes are usually enlarged in EB patients. Determining whether it is related to the skin’s normal breakdowns versus cancerous cells traveling throughout the lymphatic vessels into the nodes—comes biopsying the lymph nodes with a thin long needle. The doctor will do 3-6 passes into the lymph node under ultrasound, extracting cells to hand over to pathology.

The mental: I honestly did not want to do this surgery for a multitude of reasons. No one ever wants to have surgery but there are moments you feel like it’s just too much. Waking from surgery you experience an immense feeling of gratitude each time. This surgery was my biggest challenge I had ever experienced in my lifetime. It took away my ability to walk without the use of a wheelchair full-time, hopefully temporarily. Doing physical exercises to stretch the tightness of scar tissue forming, to prevent these areas to heal “frozen” in place. Feeling the ripping and bleeding that comes with it causes nausea. The frustrating sleepless nights due to discomfort. On top of the usual EB pains, there were now seven surgical wounds causing an endlessly loud hum throughout my entire body. It feels like a sensory overload. Unable to walk or leave the bed often causes painful bedsores, new wounds amongst areas that were stable over the years. A few weeks go by, the infection starts to set in. Taking heaps of different antibiotics wrecks my body. There were days I slept 15 hours or days I felt a force pulling my body down to sleep. I just wanted to sleep and sleep (and for once, I’m actually not anemic.) There were a few moments I wasn’t doing well—not over exaggerating, there were a few close moments. I’m still battling these infections and will require further tests to try to (hopefully) get a handle on them. Infection is sneaky and can claim a life quickly. In the midst of balancing life, health and then your emotional and mental state to calm yourself that you may be living your last day. There are many different emotions and death can be looked as a freeing experience—that’s often our perspective when we aren’t living an illness or injury. When facing hard moments physically and mentally, you have to hold to what’s good and what’s pure and try to release those fears. It doesn’t mean it won’t be scary especially when it has been your daily. In these recovery moments, in your most vulnerable and lonely days, sometimes all you can do is cry. Crying does not mean you haven’t been strong. Jesus wept. I believe that emotional response was instilled in us for a reason—to release/reveal pains, to show empathy to those hurting and even in our happiest moments we can cry. I often run from crying but it’s something I am learning to embrace in my downtime. I wish I could have told my younger self, “Just cry sweet one.” Even though EB deteriorates my physicality, it cannot rob my heart and soul.

Keep conquering. Hold dear to your loved ones. EB won’t be forever.


*DISCLAIMER: Not for the faint. If you wish to view photos of the aftermath of removing Squamous Cell Carcinoma, enter the password: ebscc at the following link: SURGICAL WOUNDS.

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